Well Hello Again...

It's been awhile! I think I've taken the stance of "If you don't have anything nice to say, don't say anything at all." I've definitely not had the miraculous recovery I was hoping for and my improvements have been small and slow. Logically, I knew this was to be expected but it's disappointing nonetheless.

I'll start with the positives. My energy level has improved. I would guess this has to do with the B12 supplement. I'm still taking an oral supplement and I think within the next month or so we'll be re-checking my levels to see if there's been an improvement. As I mentioned in an earlier post, my nausea has also improved. It's no longer 24/7 which is amazing! My "extreme episodes" which usually happen at night are also becoming more rare. Some nights I feel like I'm right on the verge of one of these episodes, but the Allegra/Zantac combination seems to put an end to it. I can feel it the moment those meds kick in and my body instantly relaxes, allowing me to pass out and sleep through the night! Hooray for that!

Logically, I know I've come leaps and bounds since last December. I've had a very active summer so far. Most active days cause me to feel a little like road kill the next day, but it's so worth it for the memories made.  In December, I was so ill that being active wasn't an option. I wasn't able to shop for my girl's Christmas gifts and when they opened them, I watched from the couch. It was the worst form of torture ever, right behind waterboarding! 

So, overall I'm doing much better but I'm still dealing with a ton of daily symptoms that are making me miserable! My everyday symptoms are congestion, ear ringing, tachycardia, shortness of breath, red irritated eyes, sore dry throat, painful joints, burning in my mouth and tongue, burning in my stomach, and palpitations. I've also been having days with extreme weakness and tremors in my arms. It's a lot like having the flu for the past seven months.

After discussing these symptoms with Dr. Goodman, he decided to add a small dose of Zyrtec to my cocktail. Hopefully that will take care of some of these symptoms. For now I'll say positive and push on and I promise to post again soon!

"But the Lord is my defence; and my God is the rock of my refuge." -Psalms 94:22

Amy

Finding Positives During a Zombie Apocalypse...

Yup, that's how my mind is working today! I don't even believe in the zombie theory, but last night I felt like I was the victim of an apocalypse. A gory, brutal apocalypse.

We had an amazing, long weekend getaway with my hubby's family (see picture below). It was a true reminder of how far I've come since December. I was able to participate (and eat) the entire weekend and even had a few milestone moments. The best moment would have to be my first sip of alcohol in well over a year. I'm not a heavy drinker but I enjoy sitting on the deck with a beer in the summer so I was ecstatic to drink half of a Bud Light Lime! Oh, the simple things in life!

It all caught up to me when we got home yesterday afternoon. Enter, zombie apocalypse and not being able to get off the couch! Of course, my mood followed and I was a grumpy mess until I gave myself a proverbial kick in the pants. Pity party over! I just had an amazing, active weekend and in December I could barely get off the couch. It's frustrating to have a simple family weekend completely wipe me out, but it's not even comparable to how I felt just a few months ago. The best part is that after a good nights sleep, I felt much less like a victim of a zombie apocalypse and much more like a survivor! I've even been able to do some laundry and unpacking today.

As far as the MCAD cocktail, when changes are slow and subtle it's hard to notice them. I feel like my nausea is improving from 24/7 to maybe 5/3! That's pretty incredible! In all honesty, it has not been the miracle regimen I hoped it would be. I'm still dealing with some menacing symptoms, but I'm functioning so much better! I pray that I will someday be back to where I was pre-gallbladder removal but am so happy to be where I am today. If this has to be my new normal, I can live with that.

"The Lord is not slow to fulfill his promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance." 2 Peter 3:9

Amy

Cocktail Update...

Wow. It's been a while! I wish I could say it's because I've been miraculously healed and too busy living life to blog. I would love to be climbing Mount Kilimanjaro, running a marathon, or bench pressing a small automobile! More realistically, I'd be ecstatic to carry my toddler up a flight of stairs, jog a half-mile, open a jar of baby food without struggling for five minutes, paint my kitchen ceiling, or mow my lawn. Baby steps.

So, the MCAD cocktail is slow-going. Slow as in watching a snail and a turtle race. I'm trying so hard to be patient and give it time. I know it's a gradual process but it's hard to take things a day at a time when you don't feel well. I think it's similar to having a job. It would be much more fun to go right to the promotions and pay raises and skip over all of that hard work nonsense!

The first few days on the Cocktail, I started with half-doses. Dr. Goodman didn't necessarily recommend I do this but I always get nervous with new meds. I had some pretty not fun reactions those first days. I'm now up to full doses (using name brand Allegra and Pepcid as I reacted to the generics). I'm no longer having the bad episodes but I feel pretty crummy overall. My stomach problems are worse than they've been for a while, my arms are extremely weak, and I'm having a lot of lightheadedness.

I'm going to call Dr. Goodman next week and check in with him. That will mark the two week point with the new meds. I'm interested to see what he says. I'm hoping my body is just slow to adjust and that things will get better. I expected these meds would either help or not, I wasn't expecting to actually feel worse. It's been a little discouraging and sometimes I feel like I'm digging my way out of quick sand, but I'm nowhere near finished with this battle. If these meds aren't my answer, then we'll try something else. There may come a day when I have to accept this as my new normal, but I'm stubborn and not ready for that yet.

"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1

Amy

First Day on the Cocktail

I started the cocktail of Cromolyn, Pepcid, and Allegra yesterday. It can take two to six weeks to start noticing improvements so I'm not surprised that I haven't noticed anything yet. I did have issues with the Allegra and Pepcid yesterday.

I took the Allegra in the morning and shortly after had a little episode. A wave of nausea, tingles all over, tachycardia, goosebumps, muscle weakness, etc. Then, I took the Pepcid at night and had issues with that as well. I kept having adrenaline surges as I was trying to fall asleep. Everyone has those moments right as you drift off to sleep when it feels like you're falling and you jerk awake. These adrenaline surges are similar to that but include tachycardia, gasping for breath, and sweating. Then I had another episode that was a mild form of the same episodes I dealt with after surgery.

It's common for people with Mast Cell issues to have sensitivities to medications. The pharmacy gave me the generic forms of the Allegra and Pepcid and I'm thinking that's what the issue was. A lot of MCAD patients react to the additives used in generic forms of medications. So, my hubby is going to get the name brand forms of those drugs and I'm hoping that makes all the difference!

On a side note, I had a great weekend! The girls and I went to my hometown for my cousin's graduation and it was great to see everyone! I've always felt so blessed to have grown up in a small town! At the graduation, I was bombarded by caring people. I received hugs and pats on the arm. I was asked sincere questions about how I'm feeling and what I've been going through. I was given many well wishes and reminded of all the prayers I'm still receiving. Unbelievable! That little community is so supportive and it was wonderful to be back! Thank you all so much!

"Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind." 1 Peter 3:8

Amy

A New Cocktail...

Well, I'm starting a new cocktail. Not exactly the kind of cocktail I'm really craving, but hopefully it'll do the trick regardless. It's the Mast Cell Activation Disorder cocktail. That's a mouthful! Why can't these conditions have nice short names. Now, when a doctor asks if I have any known conditions I have to rattle off Postural Orthostatic Tachycardia Syndrome and (if these meds work) Mast Cell Activation Disorder. That mouthful will be shortly followed by a dumbfounded expression from the hypothetical Doc as most have never heard of either condition.

The cocktail consists of Cromolyn, Pepcid, and Allegra. The Cromolyn is a liquid that I will mix with water and take four times a day (30 minutes before each meal and at bedtime). It is used to prevent the mast cells from degranulating which is a fancy word for spilling their nasty toxins into my system. The Pepcid and Allegra are just your regular old H1 and H2 blockers. They block the histamine that the mast cells release as the Cromolyn won't be able to completely stabilize things.

I'm praying this will help as these past few weeks have been miserable. The shortness of breath has still been better and I'm thanking God for that! I didn't even realize how much of an issue it was until it was gone. Amazing and so thankful for that! The rest of my symptoms are being more stubborn. The nausea, brick in gut feeling, muscle weakness, tinnitus, puffy eyes, tachycardia, extremely dry throat and skin, etc. has all been terrible since I've been back from Arizona. I think it's probably a combination of seasonal allergies along with all the other things I have going on. Whatever it is, it's miserable.

For Mother's Day we took our kiddos to the zoo. Our toddler LOVED it! She didn't want to leave the Prairie Dogs which makes sense since her best friend is her stuffed Prairie Dog named Baby Jack. He's the ugliest stuffed animal I've ever seen, but she adores him! We were only there for a couple of hours but I felt as if I had walked for days! I had a migraine, my heart rate was through the roof, extreme muscle and joint pain, terrible nausea, and lots of pressure in my head and ears. It gets frustrating! Shouldn't a mom in her 20's be able to take her girls to the zoo without feeling like she's been hit by a truck? I'm sure it will take me a week (or more) to recover from that little outing. It was completely worth it for the memories made and time spent with my little family, but frustrating nonetheless. One of these days I may need to swallow my pride and use the train tours or (gasp) use a motorized scooter, but that's a topic that deserves a post all it's own. When you appear healthy on the outside, it's hard for people to understand you might actually be disabled! I'm afraid if I cave to the scooter concept I would ride around with a middle finger in the air in response to the dirty looks ignorant bystanders might give me. I should mention that I'm normally fine walking. I only struggle when it's excessive (such as at a zoo or shopping). Considering this new cocktail is going to work, I won't need to worry about a scooter! The power of positive thinking! :-)

"And we know that for those who love God all things work together for good, for those who are called according to his purpose." Romans 8:28

Amy

Flare, Flare Go Away...

For those of us in the chronic illness business, a flare is a period of time when our symptoms are markedly worse than usual. Starting last night, I'm having a flare within a flare. Lucky me!

On December 3, 2012, I woke up from gallbladder surgery and my life was different. I knew it the moment my eyes opened. My body was in full attack mode, the start of Flare #1. I've been doing much better the last month or so. Definitely not my old self, but I'm functioning and caring for my precious babies without assistance and that's a win in my book! Then last night my body decided to give me a little reminder flare. Just in case I forgot how bad it can be.

This episode wasn't as bad as the episodes I experienced last December, but it was bad enough. I felt off all day yesterday. I can't pinpoint exact symptoms, just a general yuck feeling. Tired, nauseous, just off! Then last night, I had an episode after eating supper. It's interesting to me that my bad episodes are either shortly after supper or just as I'm drifting off to sleep. Anyways, I ate and shortly after I got that all too familiar wave of tingles and chills. This is always how these episodes start. Soon after, I got extremely nauseous and my resting heart rate went to 132 beats per minute (it's usually closer to 60). Then, I got the strange burning sensation in my stomach. It's not like an indigestion burning. It's more like the way your muscles or lungs burn after a workout. Like they are starving for oxygen. Luckily, this all passed within an hour, but I was left exhausted.

This morning I'm left with the after effects. Some lingering nausea, very weak arms, and a heart that wants to race every time I lift my finger. So, I'm loading up on Gatorade and forced myself to exercise, which is not easy to do when your heart is racing just sitting down! I'm extremely proud of the fact that I now have my Body Mass Index back into the normal range and I intend to keep it there! There is so much in my body that I can't control, so I am adamant about controlling the things I can. If there's one positive that's come from this flare, it's that I'm now more focused on living a healthy lifestyle (I've got a long ways to go though)!

On a side note, this is the worst episode I've had since my body started making its turn around. Dr. Goodman had me stop taking Zyrtec and Zantac (which I had started when I suspected I might be dealing with a mast cell issue) so we could focus on correcting my deficiencies. I'm not sure if it's coincidence or not that this bad episode comes after I stopped those medications. It's the only change I've made that may have caused this flare within a flare. Not that my body ever needs an excuse to act wacky! Dr. G. really wanted me to give these supplements three or four weeks before adding in the "Mast Cell Cocktail" so I'm going to try my hardest to stick it out. As Dori from Finding Nemo would say, "Just keep swimming!"

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

Amy

P.S. I hope I'm not being too much of a complainer with my posts lately, but this blog is a great way for me to journal these episodes! I'm very forgetful and by next week I probably won't even remember that I had an episode! :-)

Mayo Clinic - The Final Day!

I met with Dr. Goodman this morning. What a roller coaster of emotions again! Most importantly, my brain MRI was all clear! Thank The Lord! He thinks my head pressure issues can be attributed to the POTS (probably a mix of poor blood flow and some inflammation).

He ran a lot of tests looking for different autoimmune diseases. Nothing showed up on any if those and to my knowledge he didn't run the ANA which I know is sometimes used to look at the overall autoimmune system. Again, I'm not a doctor so don't quote me on any of this! :-) The only things that showed up on my tests were anemia and extremely low Vitamin B12 levels. So, the plan is to first correct those issues and then see how I'm feeling. If I'm still not having a noticeable improvement, he wrote me prescriptions for the Mast Cell cocktail (Cromolyn, Pepcid, and Allegra). One thing at a time though.

I don't have Hyper POTS. Hyper POTS is the type of POTS that usually is associated with mast cell issues, but with my symptoms Dr. G. still isn't willing to rule out mast cell. I should mention that Hyper POTS has to do with the body releasing too much norepinephrine. Mast Cells are responsible for allergic reactions and for some reason there is a group of POTSies who have over active mast cells which creates fake allergic reactions. The third condition that seems to frequently go with this trio diagnosis, is Ehlers-Danlos Syndrome. EDS is a connective tissue disorder. There are many forms of EDS, but from what I've read it has to do with the body not producing collagen correctly. I have symptoms of this as well (hyper mobile joints and fragile skin that doesn't heal well).

Doctors haven't put together all of the pieces about why these conditions tend to go together. EDS and Mast Cell Activation Disorder make sense because mast cells are housed in connective tissues. EDS is genetic and I feel there is a link on my Mom's side of the family. There is a history of joint problems and other issues that I feel fit the bill! I'm not sure what happened with me to create this perfect storm of health issues, though! Maybe one day, doctors will put all these pieces together and be able to help more! For now, I feel like I've paved the way for my own little family. There is a 50% chance that EDS can be passed on so I pray that my girls don't have it! But, if they do, we now know what it is and they won't have to go through the years of tests, doctors visits, and tears that I have.

Thank you all again for all of the thoughts and prayers! It honestly means the world to me. I am beyond excited to fly home to the frozen tundra in the morning and see my beautiful babies! I'm also going to try my best to get back into my normal routine! I'll keep updating frequently to let you all know how I'm doing! I've been absolutely blown away by the response I've received from this little blog. I'm obviously not a writer, but I'm ecstatic that my story seems to be helping others! God is good! :-)

Amy